My personal adventures and lessons learned while beating the shit out of Stage 3 Melanoma

Get Naked – A guest post by Aunt Val about visiting the Dermatologist

This is Elana/Schwam speaking here. I just wanted to introduce my Aunt Val who wrote the blog post below in November 2016. I have been meaning to share this for a while but a lot was going on at the time and now seemed like the most appropriate time to share as last week was my last NP dermatology clinical of the semester AND it was Aunt Val’s Birthday! At the end of this post I will discuss my dermatology clinical rotation as well as actual guidelines regarding skin cancer screening. But for now, I’ll let Val take it away…

Guest Blogger Aunt Val – A Trip to the Dermatologist

Hi all, it’s Valerie Rind here, aka “Aunt Val.”

Elana’s dad (Eric Schwam) is my brother, so Elana is my niece. I shed the Schwam name when I got married because I was annoyed that no one could ever spell or pronounce it.

As you know, Elana does more than just make the best of a bad situation (like having an inconvenient last name, or, oh, y’know, having cancer). She continues to amaze everyone by turning things completely around and showing who’s the Schwamboss.

Almost makes me wish I kept the name. Nah, not at all.

I’m the least medical person in the family where my brother = doctor, my sister = nurse, and me = lawyer and author.

I still don’t know how to pronounce Keytruda or Ippitymumbai and it’s a damn good thing I don’t have to inject myself.

So my comments are from a layperson’s perspective (i.e., medical idiot) but I hope they’ll be helpful.

Aunt Val Visits the Dermatologist

Two or three years ago I went to a local dermatologist about a small mole I had (on my left breast, if you really must know). He said it looked OK.

This year I noticed the mole was getting more pronounced. I told myself to get it checked, but you know how it is. One more thing you keep putting off. Particularly if it might involve needles.

Prompted by Elana’s diagnosis, I said to myself, “Self, go get that thing examined. Now.”

Aunt Val Visits a New Dermatologist

Another dermatologist examined my mole and said it looked perfectly normal. He excised it while I tried to distract myself by telling him all about my awesome niece Elana.

My ex-mole was sent off for biopsy.

The dermatologist asked if I wanted a full body exam. I thought he meant he’d pass some electronic gizmo over the surface of my skin to see what showed up. (You medical experts are NOT allowed to laugh at me.)

He explained it was a visual exam. I dropped my gown and he looked a bit startled. You’d think he’d already seen many naked, mid-life women during his medical career. After all, just moments ago he was up close and quite personal with my left breast.

Nothing on my body looked abnormal, he reported.

It’s What We Don’t Know

The dermatologist pointed at some faint white spots on my arms. “I know exactly how you got those,” he said. “When you were a teenager, you slathered on baby oil, lay in the sun, and burnt your skin. Repeatedly.”

“Well, of course, that’s what everyone did,” I said. “Now I use SPF 6249 or whatever the highest one is that blocks everything.”

We didn’t know 40 years ago that frying our skin was harmful. The dermatologist theorized that in 40 years we’ll discover that using cellphones has long-term consequences. Whatevs.

Lessons Learned the Hard Way

Elana’s experience has taught me many things so far:

The power of the spirit.

The advantages of healthy living.

The incredible importance of having the emotional support of your family, partner, friends, and colleagues.

The need to get accurate, up-to-date medical information and informed opinions.

That medicine sometimes asks a lot more questions than it answers.

That you need to make the decision that’s right for you.

That a keen sense of humor is essential.

And if you have any doubts about a medical matter, don’t delay. Get it checked out.

Again: If you have any doubts, get it checked out.

Oh, and in case you wondered: The biopsy of my mole showed it was benign.

#fuckcancer #awesomeniece

Aunt Val with my brother Aaron and I probably in the late 80’s?

Aunt Val!

Thanks Aunt Val! This is such an important message to send out to the world. If you interested in more words of wisdom by my Aunt Val, check out her website http://ValerieRind.com. She also wrote a book,Gold Diggers and Deadbeat Dads, whichis available at Amazon, on the iBookstore, and at Barnes & Noble for NOOK.

Skin Cancer Screening – Soap Box Alert!

For part of my clinical rotation this semester I had to research a screening guideline so naturally I picked the topic of skin cancer. I was surprised and pretty upset about finding out the following U.S. Preventative Services Task Force (USPSTF) statement on skin cancer:

“There is insufficient evidence on the benefits or harms of routine visual skin examinations by a clinician to make a recommendation for or against this type of skin cancer screening for adults (18+) who are asymptomatic” (USPSTF, July 2016).

Seriously? Go eff yourself.

This recommendation based on poor, inconsistent research in skin cancer screening and there is fair evidence that supports screening for skin cancer by clinicians to be moderately accurate in detecting melanoma.

Keep in mind, this recommendation does not apply to:

Adults with a personal or family history of skin cancer

Adults with high-risk of skin cancer

Self-skin exams

Exams done by dermatologists

The American Academy of Dermatology (AAD) responded to this statement:

“The American Academy of Dermatology is disappointed with this recommendation [via USPSTF], as dermatologists know that skin cancer screenings can save lives, yet we acknowledge the need for additional research on the benefits and harms of skin cancer screening in the primary care setting.” – (AAD, 2016)

Other Recommendations include:

American Academy of Dermatology

Recommends performing regular skin self-exams (once a month) to look for new or suspicious spots, and seeing a board-certified dermatologist to evaluate anything changing, itching or bleeding on the skin.

If you are at high-risk of skin cancer – seek dermatologist to see how often you should get skin cancer screenings (AAD, 2017).

American Cancer Society

Recommends skin cancer screening every 3 years for adults age 20-40, and annually for adults older than 40.

American College of Preventive Medicine

Recommends a full body clinical skin exam for patients at high risk for malignant melanoma.

American College of Obstetricians and Gynecologists

Recommends screenings for females aged 13+ with a history of habitual exposure to sunlight, a family or personal history of skin cancer such as basal cell carcinoma (BCC), squamous cell carcinoma (SCC), or malignant melanoma (MM) (Buttaro et al, 2017, p.245).

As you can see, nobody really agrees on the regularity in which people should get their skin checked and if they should get their skin checked at all. The underlying theme is if you are at high risk, start a conversation with your dermatologist (if you have never seen, one now is the time to get one)

All this talk about “high-risk” patients, who is at high risk?

– The sun causes 90% of skin cancers

People with fair or light colored skin

Skin that burns or freckles rather than tanning

Having naturally blonde, red, or light brown hair

Having blue or green eyes

Having more than 50 moles, large moles, or irregular (atypical/dysplastic) moles

Having a family history of skin cancer (blood relative)

Caucasian males over age 50

History of blistering sunburns, especially in childhood

History of indoor tanning use

Recipient of an organ transplant

Having a weakened immune system (due to immunosuppressive drugs or HIV)

Hx of other cancers such as breast or thyroid cancer

Taking medications that make you skin more sensitive to the sun

Certain autoimmune diseases – (Lupus)

Having xeroderma pigmentosum or Gorlin Syndrome

Exposure to carcinogens such as arsenic or coal

Having an area of skin that has been badly burned by the sun or other means.

Warning signs of skin cancer

Any mole or spot that changes in size or texture, develops irregular borders, or appears pearly, translucent, or multicolored.

ABCDE’s of Melanoma – arguably the most important info you can provide for a patient, caregiver, or friend (AAD, 2016; American Cancer Society [ACS], 2016).

There are a TON of amazing free resources on the AAD website that includes in-depth fact sheets, charts to monitor your own monthly self-skin exams, and other really informative sheets about all types of skin cancer. Overall, we are our own best advocates. If you notice something on your body changing, be an intelligent human and go get it checked out (like my Aunt Val!)

My mole was on my back. It became itchy and I’m sure it was evolving as I remember not knowing if it had existed before it started itching. Since the risk of having another melanoma is very high for me, I am checked every 3-4 months this year. Eventually I will probably move on to the skin exams every 6 months but the reality is that most patients discover their own skin cancers, which is why I still check my body monthly. It’s important not to check more than monthly, otherwise you won’t notice subtle changes.

Okay, I’ll get off my soap box now. I have a shitload more information about skin cancers and treatments and such but I will hold off for now. I’ll eventually move this info over to a permanent page on my site so it’s easier to reference.

Life Updates:

No news, is good news! Things have been pretty uneventful for the last month or so since my last post, which is the least amount of action or “adventure” I’ve had in my life since I was diagnosed. This is excellent because I was honestly pretty exhausted from all my own organs raging mini civil wars on my body. I have been deep in ultimate frisbee training and tryouts for Brute Squad, which are going pretty well. It’s amazing to me every year how many young up-and-coming ultimate athlete’s there are. Every year the sport gets more and more competitive and it’s so awesome to see it grow, but also, it makes tryouts pretty fucking exhausting. I’m one of the oldies now at the ripe old age of 30 but I’m hanging in there.

School is wrapping up this semester with this being the last week of class and I have two finals next week. I can’t tell you how much I am looking forward to having a real extended vacation without cancer treatment or NCLEX studying. I will finally get around to emailing so many people who have reached out to me these past 10 months as well as organizing my normal life a little bit more.

Some exciting things that have happened over the last few weeks include my first easter egg hunt with the Freedman’s (see instagram video), packing up my childhood bedroom since my parents are moving out of Westborough mid May, more wedding planning, and completing my first ever Boston midnight marathon bike ride! The ride was super fun and something I have been wanting to do since I first heard about it.

The Boston Marathon has always been my most favorite Monday and running it has been an item on my bucket list since I first watched runners truck up heartbreak hill several years ago. I get strangely emotional about marathons (maybe I’m not alone?) I think it is such an amazing human feat and it brings me to tears thinking about it. I’ve cried every marathon Monday I’ve attended or watched (and even during a few documentaries that weren’t even about Boston). I have decided that next year (2018) I am going to apply to run and raise money for the Melanoma Foundation of New England. Obviously applications haven’t opened yet, but it’s something I feel really passionate about doing and hope they let me in.

I won’t have scans or skin checks until June, so everything should hopefully stay quiet until then. Minor micro-burst headaches still but they are less and less frequent. Looking forward to celebrating my cancerversary June 28th!

The starting line crew!

30 miles later

it’s now 2am

Photo I found of me going to my mom’s MSW graduation

Easter strawberry short cake

my easter basket thanks to the Freedmans!

RyFight

I am not the only ultimate frisbee player battling cancer. There is a guy from New York named Ryan, who I don’t think I know personally, but it’s possible we’ve crossed paths without knowing it (in the tiny ultimate world). Ryan was diagnosed with colorectal cancer in Sept. 2015 that ended up being stage 4. In short, things have not been going as well for him as they have for me. His blog is amazing, and it’s easy to tell very quickly that Ryan is an extremely genuine guy with a huge heart. Laura Bitterman and my Brute Squad teammates set up a fundraiser (schwaming cancer tanks) for me last summer when I was first diagnosed and it was unclear if my health insurance was going to cover anything. I have been extremely fortunate for new immunotherapies combined with masshealth and the Affordable Care Act, that have left me with a surplus of donation money that I haven’t touched and haven’t really known what to do with. It’s always possible my cancer can recur but right now I am doing alright and when I read about Ryan’s unfortunate updates, I knew I wanted to help out. Please check out his page and consider donating as well .

I’ll update again sometime in May. For now, stay sexy and fuck cancer!